Hi
Have joined this group (rather not be here, but dont have a choice do we?) for a bit of advice please.
My husband was diagnosed with GBM4 last July, so almost a year since craniotomy, radiotherapy and chemotherapy. He has been through such a lot with side effects to steroids and to the chemo (low platelets, high blood sugar). He declined any more treatment after that. His oncologist agreed and as such passed us on to palliative care. This has been very good.
However, he is now bedbound (hospital bed in the living room), because he has lost the use of his right leg and arm completely. He also has carers in twice a day to help with personal care. He feels he is being a burden and cant wait for it all to end, as he puts it. Naturally, I am devastated. The worst thing so far is that on his 'down' days which get more frequent, I just dont know what to talk to him about. He isnt one for going over emotions and memories and has little interest in the world around him. The exceptions are our two daughters, grandaughter and grandson, but even then he can only see them for about an hour before he is wiped out. How can I make his last few weeks more bearable? He watches TV, but has difficulty using an ipad or his mobile phone, because of his lack of dexterity.
Sorry I have gone on for so long, but I am doing all I can for him (he says too much), but sometimes just cant seem to get it right.
Any advice gratefully received,
Thanks,
Llamalover xx
Hi Llamalover, have been looking through some of your posts in the other groups and I see you have been receiving some great support, this is what the Community does best.
You can only do what you can. It’s such a hard time for you and as I am the one with the incurable cancer I can only scratch the surface as to what it’s like to be the person sitting beside the bed. I have been on my journey for 22 years and what I put my wife Fiona though was so challenging, not by my making, just the cancer journey that can develop.
I just asked her what advise she can give, she said the main thing that helped her weather the storm was talking with others and especially getting cancer carers specific support so she reminded me that we both received great support from our local Maggie’s Centre as these folks are amazing. During lockdown a lot of their services moved onto online video support. But I see our local Maggie’s (Inverness) are starting to open up for one on one support.
Up where we stay in the Highlands people will do a 4hr round trip just to visit the centre, this is how helpful their support is.
As always Macmillan Support Services is available on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week. This service provides lots of cancer information, support, financial guidance or just a listening ear.
I have not brought much to the table for you but just wanted to identify that there are many people on the Community around to listen and support as best as they can ((hugs))
Hi again Llamalover, yes it’s all so unfair to ever single person involved in a cancer journey, it is what it is and we have navigate this as best as we can….. there are often many ‘down’ times but it’s grasping the up times and enjoying them as best as we can.
I mentioned Maggie’s for you….. not necessarily your husband. My wife Fiona said the support staff at Maggie’s brought a different prospective to the table compared to our Macmillan Nurse teams as their focus is often treatment based and the time available to ‘unpack’’ this invisible ruck sack we are given that just continually collects stuff is limited ((hugs))
….. even although I am over 5 years out from treatment my rucksack has Stilton be taken off and rummage through 
